Children and Death – Page 20 – The Amateur's Guide To Death & Dying

Children don’t experience grief quite the same way as adults.

“Children pop in and out of pain and sadness,” said children’s counselor and author Donna Schuurman. “Adults tend to be more steeped in their grief — they don’t bounce in and out as much and often sleepwalk through their grief.”

Rituals can help children work through grief.

This is Children’s Grief Awareness Month, a time to consider the needs of these sometimes forgotten mourners.

Schuurman, author of the book “Never the Same: Coming to Terms with the Death of a Parent,” knows a little something about children’s grief. She has a 30-year stint with the Dougy Center in Portland, which provides a haven for grieving children and their families. She and other Dougy Center staffers have also assisted after large-scale tragedies such as the Oklahoma City bombing, 9/11 attacks and the 2011 earthquake and tsunami in Japan.

When someone dies, children grieve. Sometimes adults make the process harder.

“There are a lot of things people do to make it worse, such as not allowing kids to have their feelings, whatever they are,” Schuurman said. “We have a tendency to want to cheer people up.”

Talking about the person who died is a good thing, instead of avoiding the subject. Sharing memories helps kids heal.

“They are trying to hold on to precious threads,” she said. “Acknowledge the person with “There’s nothing I can do to bring your dad back, but I want you to know I care” or “Can I tell you a story about your dad?”

After a death, children worry about their other family members dying, too.

“Anyone could die any moment,” she said. “There is heightened anxiety.”

Children sometimes don’t have the words and experience to understand death the same as would an adult. In one Dougy Center video, a three-year-old named Myia described losing her mommy.

“I wanted to sing ABCs with my mom and she stopped singing,” Myia said. “Her body stopped singing.”

“Then what happened?” a Dougy Center staffer asked from off camera.

“She died and then I was crying,” Myia said. “It was not good. I had a bad feeling.”

The little girl’s brown eyes radiated deep sadness, more than any child should have to bear.

As with adults, a child may take a long while to grieve a loss. That’s okay, Schuurman said.

“In our society, we want quick fixes. We want to get through it,” she said. “You can’t rush grief. It’s not quick. It takes digestion time.”

Basically, Schuurman said, there’s no map for the grief journey and sometimes the process is not a linear one.

Children need to recalibrate their lives after the death of a parent, sibling or other loved one. Sometimes there is guilt. Relationships are complicated, that way. A sibling, for example, might have been someone the child both loved and hated, depending on the moment.

If a death came with a lot of physical trauma, a parent might wonder how much to tell a child about the person’s final moments. Schuurman urged candor, as much as the child can handle.

“It’s best to answer their questions honestly, but don’t tell them more than they’re asking or they are open to,” she advised.

When a child asks whether the person died instantly or whether he or she suffered, it’s tough.

“You want to say no when the reality is they were moaning for an hour,” she said. “I might say, ‘From what I understood of the hospital report, he didn’t die instantly. I don’t really know, but the body protects us from horrible pain by going unconscious.’”

Processing grief is easier when the child can spend time with other children who have suffered loss.

“Until you experience death in your own life, it’s hard to understand,” she said. “So you come to be with others who get it.”

Complete Article HERE!

November 14, 2016November 12, 2016

Cry, Heart, But Never Break: A Remarkable Illustrated Meditation on Loss and Life

“Who would enjoy the sun if it never rained? Who would yearn for the day if there were no night?”

BY MARIA POPOVA

“Each day, we wake slightly altered, and the person we were yesterday is dead,” John Updike wrote, “so why … be afraid of death, when death comes all the time?” Half a millennium earlier, Montaigne posed the same question somewhat differently in his magnificent meditation on death and the art of living: “To lament that we shall not be alive a hundred years hence, is the same folly as to be sorry we were not alive a hundred years ago.”

Yet mortality continues to petrify us — our own, and perhaps even more so that of our loved ones. And if the adult consciousness is so thoroughly unsettled by the notion of death, despite intellectually recognizing it as a necessary and inevitable part of life, how is the child consciousness to settle into comprehension and comfort?

Now comes a fine addition to the most intelligent and imaginative children’s books about making sense of death — the crowning jewel of them all, even, and not only because it bears what might be the most beautiful children’s book title ever conceived: Cry, Heart, But Never Break (public library) by beloved Danish children’s book author Glenn Ringtved and illustrator Charlotte Pardi, translated into English by Robert Moulthrop.

Although Ringtved is celebrated for his humorous and mischievous stories, this contemplative tale sprang from the depths of his own experience — when his mother was dying and he struggled to explain what was happening to his young children, she offered some words of comfort: “Cry, Heart, but never break.” It was the grandmother’s way of assuring the children that the profound sadness of loss is to be allowed rather than resisted, then folded into the wholeness of life, which continues to unfold. (I’m reminded of Maria Kalman’s unforgettable words: “When Tibor died, the world came to an end. And the world did not come to an end. That is something you learn.”)

This warmly wistful story begins outside the “small snug house” where four children live with their beloved grandmother. Not wanting to scare the young ones, Death, who has come for the old lady, has left his scythe by the door. Immediately, in this small and enormously thoughtful gesture, we are met with Death’s unexpected tenderness.

Inside, he sits down at the kitchen table, where only the youngest of the kids, little Leah, dares look straight at him.

What makes the book particularly touching, thanks to Pardi’s immensely expressive illustration, is just how crestfallen — broken, even — Death himself looks the entire time he is executing his mission, choked up with some indiscernible fusion of resignation and recompense.

In the quiet, the children could hear their grandmother upstairs, breathing with the same raspy breaths as the figure at the table. They knew Death had come for her and that time was short.

To stall the inevitable, the children devise a plan — believing that Death only works at night, they decide to keep refilling his coffee cup until dawn comes, at which point he would have to leave without their grandmother. Here, too, one is struck by the ordinariness of Death, for what can be more ordinary — and life-loving, even — than to enjoy a cup of coffee at the kitchen table?

But Death eventually curls his bony hand over the cup to signal that the time has come. Leah reaches her own tiny hand, taking his in hers, and beseeches him not to take their darling grandmother. Why, she insists, does grandma have to die?

Some people say Death’s heart is as dead and black as a piece of coal, but that is not true. Beneath his inky cloak, Death’s heart is as red as the most beautiful sunset and beats with a great love of life.

Death is once more overcome with kindness and compassion for the children, so he decides to answer Leah’s question with a story, hoping it would help them understand why dying is natural and necessary.

He tells them of two brothers named Sorrow and Grief, who lived in a somber valley and went about their days “slowly and heavily” because they never looked up, because “they never saw through the shadows on the tops of the hills.”

Beyond those shadows, Death tells the kids, lived two sisters, Joy and Delight.

They were bright and sunny and their days were full of happiness. The only shadow was their sense that something was missing. They didn’t know what, but they felt they couldn’t fully enjoy their happiness.

As Death is telling the story, little Leah nods her head, for she can tell what is to come — the two boys meet the two girls and they fall in love, two perfectly balanced couples: Sorrow and Joy, Grief and Delight.

Death tells the kids:

It is the same with life and death… What would life be worth if there were no death? Who would enjoy the sun if it never rained? Who would yearn for the day if there were no night?

Something difficult and beautiful has sunk in.

When death finally gets up from the table to head upstairs, the youngest boy is moved to stop him — but his older brother puts a rueful hand on his shoulder and gently discourages him.

Moments later, the children heard the upstairs window open. Then, in a voice somewhere between a cry and a whisper, Death said, “Fly, Soul. Fly, fly away.”

They hurry upstairs, where their grandmother has died — a moment of great sadness, enveloped in warm peacefulness.

The curtains were blowing in the gentle morning breeze. Looking at the children, Death said quietly, “Cry, Heart, but never break. Let your tears of grief and sadness help begin new life.”

Then he was gone.

Ever after, whenever the children opened a window, they would think of their grandmother. And when the breeze caressed their faces, they could feel her touch.

Cry, Heart, But Never Break comes from the courageous Enchanted Lion, who have brought to life such daring and deeply nuanced picture-books as The Tiger Who Would Be King, Little Boy Brown, The Lion and the Bird, and Louis I, King of the Sheep.

Complement this particular masterpiece with Oliver Jeffers’s The Heart and the Bottle, which explores what we stand to lose when we deny difficult emotions like grief, and Michael Rosen’s Sad Book, a beautiful meditation on loss, illustrated by the great Sir Quentin Blake. For a grownup counterpart in the same spirit, see Elizabeth Alexander’s The Light of the World. For an Eastern perspective, see how a Zen master explained death and the life-force to a child.

Complete Article HERE!

October 5, 2016October 5, 2016

Support group helps children share the pain of loss

By Taylor Dungjen

Kela Grooms, 10, who lost her mother to cancer, cries during a group activity with volunteer Julianne Lang

A small voice from the back of the room chimed in as the laughter and chatter quieted.

“I never really smile,” said Kela Grooms. “Even when I’m happy, I don’t really smile until I’m extremely happy.”

The other four young girls seated at the table were quiet, like they understood exactly what Kela, 10, meant.

They had laughed, and they felt OK just then, but sometimes they can feel so sad they can’t explain it. Sometimes they understand why — they’re mourning the loss of a parent or a sibling or grandparent. Sometimes the sadness comes unexpectedly and hangs over them like a heavy blanket.

Each of the children in this group has experienced a traumatic loss of a loved one — a family member usually, but sometimes a friend. Twice a month they meet in a small room at Good Grief of Northwest Ohio, a peer support group for children who have experienced the death of someone significant in their lives.

The nonprofit organization, funded through grants and donations, is headquartered in Holland in western Lucas County. The group has one full-time and three part-time employees. The rest of the staff, including those who run the peer groups, are volunteers. Good Grief serves about 30 families; about 25 children come for each session. There is no cost for families seeking services at Good Grief, and they’re allowed to stay as long as they feel necessary.

Dorothy Mockensturm, the managing director, said the average length of stay is about 11 months.

“It’s up to the families to decide when they feel like they’re done for now,” she said. “The door is always open. Different milestones in kids’ lives can change how things are going.”

On a recent Tuesday, Kela and the other four girls — making up “the middles” age group — started their meeting as they do every time they’re together.

Say your name and tell us who died.

Alena Burke, 9, who was new to the group that night, introduced herself. Her dad died, she said. So did her great-grandmother.

Bailey Clark, 9, said her sister died. On Bailey’s lap was a stuffed Pikachu toy. Her sister would have loved the Pikachu, she said.

Sophia Moran, 8, told the girls her twin brother died.

Caylen Crowl, 9, lost her father.

And Kela lost her mother.

“It’s not counseling. It’s not therapy. It’s a place where kids can come and spend two hours every other week and be with other kids who have also gone through the death of someone significant in their lives,” Ms. Mockensturm said. “Everyone here is going through the same thing.”

Beth Johnston, a three-year volunteer at Good Grief, pulled a stack of cards out of a small plastic bag. On each card was written a different emotion: depressed, frustrated, enraged. The girls played a game, acting out each of the emotions and guessing what each was. It was a way to get the girls to think about the different ways they feel and the emotions they experience.

“How many feel like they might be depressed?” Ms. Johnston said.

That started the girls going. It prompted Kela to say she doesn’t smile as much as she used to.

Kela’s mother, Kristine Grooms, died March 10, 2015, from adrenal cortical carcinoma, a rare form of cancer. She was 37.

“Why don’t you smile?” Ms. Johnston asked Kela. The other girls were quiet.

“It’s still, like, my mother is not here,” she said. “What am I supposed to do? I have a good time in band, but I still don’t smile about it. This is my mother’s saxophone, and I’m playing the exact instrument that she did. It still doesn’t make me smile until I realize if I get good at this, she’d be extremely proud of me.”

Ms. Johnston wanted to volunteer at Good Grief to “pay forward what I’ve learned,” she said. Her fiance died five years ago.

“I found out grief is upside down and sideways. You can be happy and miserable and scream out,” she said. She learned, after about a year of grieving, that she could be happy again, but in a different way.

“I know where they are and what they’re going through,” she said.

Deb Crowl founded Good Grief after her husband, John, died unexpectedly in March, 2014. He was 49.

She and her two daughters, Caylen and Chloe, 13, go to Good Grief. When the girls are in their peer meetings, Ms. Crowl is in one of her own.

Adults who bring children aren’t required to attend a group meeting, but Good Grief offers two: one for caregivers who are helping a child deal with grief and another for caregivers who are also navigating their own grief.

“I think that’s been really beneficial,” Ms. Crowl said. “It’s two-fold for us. We get things that help us as adults and as parents but also help us with our kids who are going through that process.”

Ms. Crowl, whose father died of lung cancer when she was 21, said the peer support has helped her deal with residual grief she never worked through as a young adult.

Sophia Moran, one of the young girls in the “middles” group, held in her hands two butterfly clips. The butterfly represents her twin, Rayden.

About 30 weeks into her pregnancy, Sophia’s mother, Julia Mortensen-Moran, learned her son, who had been so active, died in utero.

Mrs. Mortensen-Moran carried the babies until they were full term, delivering Rayden stillborn. Sophia and her mother attend Good Grief to understand better their feelings about Rayden’s death.

When Sophia started school, she was having a hard time making friends with siblings; they would ask her, “Do you have any brothers or sisters?”

Technically, yes, but explaining and understanding death at such a young age is hard.

Through some Internet searches, Mrs. Mortensen-Moran found Good Grief and, that day, they started attending meetings.

“Immediately it was life changing,” she said. “She had a connection. It’s been great.”

Complete Article HERE!

September 12, 2016September 10, 2016

Dying Mother’s Lost Letter To Daughter Is Returned 12 Years After Her Death

By Eleanor Harmsworth

If Blanche DuBois’ words about the kindness of strangers have ever been truly applicable, that time is now.

A letter written to a 4-year-old girl by her dying mother was found by a kind stranger and returned to the grown woman 12 years later.

Gordon Draper – the owner of Bondgate Books in Bishop Auckland, England – found the letter in a stack of secondhand books. He instantly recognized that it was extremely special.

The letter was folded with an old photograph of a woman with short hair and glasses. She had a young girl on her knee, who was undoubtedly her young child.

“Bethany (my little treasure),” the letter begins. “If your dad is reading this to you, it is because I have died and gone to heaven to live with the angels.”

The letter goes on to explain,

My chest was very poorly, and I had an operation to make it better, but it didn’t work. I will always be in the sky making sure you are alright and watching over you.

The dying mother tells her daughter that it’s OK to grieve, and that she will always be with her.

I will always love you and don’t let anyone tell you it’s wrong to talk about me because it’s not. I hope you don’t forget me because I’ll always be your mam.

“I’ll always be your mam.”

Draper realized the importance of this letter, and decided that he must return it.

Here’s what the letter said in its entirety:

Bethany (My little treasure)
If your dad is reading this to you It is because I have died and gone to heaven to live with the angels. My chest was very poorly and I had an operation to make it better but it didn’t work. I will always be in the sky making sure you are alright and watching over you.
So when you see a bright star like in the nursery rhyme Twinkle Twinkle Little Star that’s me. Be a good girl and live a long happy life your dad and Granda will look after you and take you to school.
I will always love you and don’t let anyone tell you its wrong to talk about me because its not. I hope you dont forget me because I’ll always me your mam. Lots of hugs and kisses.
Goodbye
Mam
PS I’m depending on you to look after Rosie for me now. Don’t forget her will you not.

Draper wrote into the local newspaper, The Northern Echo. They ran the story on their front page last weekend.

Bethany Gash – who is now 21 years old with a child of her own – was sent the article by a friend. The letter had gotten lost five years after the death of her mother, when the family moved house.

Bethany was overwhelmed.

I thought it could never be found. I really can’t describe it because I never thought that the day would come.

When Bethany and Draper got in contact, he realized that they had already met. Draper had met Bethany’s mother when she had come into his shop to buy books for her young child.

“She was really poorly when she came in, but she bought lots of books for the kiddie who was just a little girl,” he said.

Bethany’s mother had been battling cystic fibrosis. She died in 1999, at just 36 years old.

“She really spoiled her with all the ‘Beatrix Potter’ sets and ‘Paddington Bear’ books, and could not have emphasized more that books meant a lot and she wanted to leave her something,” Draper added.

But after the move, Bethany never expected to see the letter ever again. “The length which these two gentlemen have gone to reunite me with it is just amazing,” she said.

To honor the memory of Bethany’s mother, Draper presented Bethany with a set of “Winnie the Pooh” books for her son, Oliver, just as he had done for her mother more than a decade earlier .

“It’s so lovely seeing her again,” he said. “She looks like the same little girl I saw in her pram when she was in my shop before.”

Complete Article HERE!

August 27, 2016August 26, 2016

When teaching kids about death, be honest

By Vikki Ortiz Healy

While decades ago parents may have been inclined to keep secrets from children and steer away from discussions of death and dying, child psychology and hospice experts believe being honest about how life and death work is a healthier approach.

It started off as one of the more grim moments in the final days of my dad’s long struggle with Alzheimer’s disease. A hospice chaplain and a funeral home director sat with me and my mom at her kitchen table. Knowing Dad’s death was imminent, we were choosing prayer memorial cards and planning a memorial service when my 5-year-old daughter took a break from playing with the dog to offer some much-needed levity.

“What are you guys talking about?” Gracie asked, climbing into my lap and surveying the catalogs of coffins, urns and other funeral needs.

“We’re talking about how sick Grandpa is,” I said, distracted.

“You’re talking about him dying,” Gracie corrected, catching everyone’s attention before adding innocently, “Is Grandpa going to get buried or burned up?”

The whole table couldn’t help but smile through tears at her youthful candor.

A few weeks earlier, I had explained to her the difference between being buried and cremated when she noticed a cemetery outside the car window. At the time, she was startled by the idea that people were underground, so I told her that some people choose to get turned into ashes that can be spread in places they loved.

I realized that to Gracie, my cemetery explanation was a piece of a puzzle about life that she was slowly putting together in her own way.

She made us laugh again when she followed up with her next question:

“When you burn up my grandpa, can I have his arm?”

In most other cases, my instinct is to shelter and protect my daughters from the harsh realities of the real world. I cheer on her first wiggly tooth and perpetuate her excitement about the first visit from the Tooth Fairy. I lie in bed with her at night and tell long stories about imaginary parties she throws with all her favorite fictional characters. I go out of my way to never complain about my weight or physical appearance in front of them, because I dread the day they’ll realize that women make a pastime out of being hard on themselves.

Yet for some reason, as my dad’s illness and, ultimately, his death, were upon us, I felt the need to do the opposite: to be real about how life — and death — work.

Thankfully, I’ve found that child psychology and hospice experts agree with this approach.

While decades ago parents may have been inclined to keep secrets from children and steer away from discussions of death and dying, the hospice counselors we worked with set aside time to read Gracie a children’s book that helped her talk about losing a loved one. In the weeks leading up to his death, they invited her to ask any questions she might have about what was happening. They counseled me, too, on how to best answer her questions in an age-appropriate way.

“Allowing children to be a part of the grieving process with the community is actually helpful and healing for kids,” said Sally Miller, chaplain at Advocate Good Samaritan Hospital in Downers Grove. “Naming the loss that they’re probably already aware of, and being there in that open space to comfort it is how they’re going to be able to move through their grief in a safe way.”

Miller said she and her colleagues who counsel patients both in and out of Good Samaritan Hospital encourage families to be direct with children by using the words “death” and “die” instead of “expire,” “pass away” or other euphemisms that could confuse vivid imaginations. They encourage parents to follow children’s lead in offering explanations, being mindful not to have an air of secrecy, but also not to give children details that may be too frightening or too abstract for them to comprehend.

The advantage, Miller said, is that children who are properly guided and supported as they learn about heavy issues will be exposed to age-appropriate exploration of emotions, coping skills and other emotional intelligences that will serve them for years to come.

I agree with this theory. But still I was surprised when, minutes after my dad died, the hospice chaplain asked if I was going to let Gracie come to see her grandpa one last time to say goodbye. The chaplain reasoned that after spending years visiting her sick grandpa weekly, it could be jarring for her to return to the house and see no trace of him. Knowing our family was also not planning a traditional wake and funeral, she argued that it would be quite a leap to ask a 5-year-old to process her grandpa disappearing and landing in heaven.

Though I wasn’t completely sure it was the right choice, we let the girls come join us at my parents’ house a half hour later. They ran in the door excitedly, greeting the rest of the family with hugs and kisses and surveying the surroundings.

I asked the chaplain if I should say something directly to Gracie, but she reminded me to let the child lead. “Just let her get to it,” the chaplain said. “She will.”

And sure enough, minutes later Gracie asked to see Grandpa.

With tears in our eyes, we watched her walk confidently into her grandpa’s room, where she climbed up the railing of his hospital bed and kissed his forehead.

“Bye, Grandpa,” she said. “You’re going to go to heaven. And angels are going to guide you.”

Complete Article HERE!

August 23, 2016August 21, 2016

Saying goodbye: Inside the world’s first children’s hospice

FOR a parent whose child is facing death, the future looks bleak. But at the world’s first children’s hospice, staff ensure that life is celebrated, as our writer reports.

By Rachel Carlyle

'Death happens, but the living goes on' — ‘Death happens, but the living goes on’

At the end of the main corridor in Helen House, the world’s first children’s hospice, lies the Little Room. It’s smaller than the other eight bedrooms, simply furnished, and it’s the place parents dread.That’s because it’s where they come when their child has died: the room is kept cold to preserve the body and give the family time to say their goodbyes and give their last hugs. Of course, there are tears here but also laughter and smiles: the room has been decorated as a fairy castle and a spaceship over the years. One time, on a boiling hot day, a grieving family took a break for a water fight on the grass outside.

“We could hear squeals from the parents and siblings of the child who had died,” recalls Clare Periton, chief executive of the hospice in Oxford. “It’s moments like those that capture what we’re about here. Death happens, but the living goes on, there’s still room for fun, and no one judges you.“Parents who come here with their children are scared by the Little Room, but afterwards say it made all the difference to be able to have time with them to say their goodbyes and come to terms with the fact that their child is cold.”

Children-hospice2 — The normalising of death as part of life is what makes hospices so special

We can’t see the room today because it’s being used, but we visit the Starfish Room, the equivalent in Douglas House, the sister hospice for 16 to 35 year olds next door. The room is at the centre of the seven-bedroom building. There’s a discreet door at the back that leads directly outside via a long corridor.It was designed for coffins to enter and leave by – but no one can ever remember it being used. “The young people tell us they came in through the front door and they will go out of the front,” says Clare. This normalising of death as part of life is what makes hospices so special.On the bed in the Starfish Room is a lovingly hand-stitched quilt featuring a parable that explains the room’s name. A man spends his days rescuing beached starfishes by throwing them back into the sea. “What possible difference are you making?” someone asks. “There are so many stranded starfish.”“It makes a difference to this one,” the man replies, holding up a single starfish.“It’s a philosophy to live by,” says Clare. “You can’t change the world completely but you can make a difference to your bit. This is what we are trying to do here.”

Helen House was the world’s first children’s hospice when it opened in 1982. It was the result of a friendship between a nun, Sister Frances Dominica, and the parents of a terminally ill two year old, Helen Worswick, desperate for respite care. It was built in the grounds of the convent; Douglas House was added in 2004.

'You can’t change the world completely but you can make a difference to your bit' — ‘You can’t change the world completely but you can make a difference to your bit’

It should be a subdued place because what could be more upsetting than a child’s death? But there’s a bustling, playful atmosphere. “It’s full of laughter and smiles. Staff aren’t moping about, there’s none of that tilted head earnest sympathy,” laughs Clare, who took over six months ago but has worked at the hospice for 11 years having trained as a nurse.“Children need to play and have fun, no matter what is going on in their lives.”There’s a huge, airy playroom at the heart of the modern building. There’s a teacher on site, a games room, a hot-tub room (where parents can take a well-deserved break), music room, sensory room and two family flats. There are 250 children on the books at any one time: some come here for end-of-life care in the last few weeks, others with life-limiting conditions come for respite care a few times a year to give their parents a break.Staff go to incredible lengths to make children’s last days happy and memorable: one 21 year old with cystic fibrosis was desperate to see the new Paddington film before he died, but the DVD hadn’t yet been released.Someone managed to get hold of a copy, it was couriered up from the company in London and a red carpet duly hired for the full premiere experience. Just yesterday, a six-year-old girl got her dearest wish: a trip round Oxford in a horse and cart.

As well as what Clare calls the “sparkly” experiences, they organise ordinary trips to the pub or to Costa Coffee for very ill or disabled young adults who want a slice of normal life.

'We know more than anyone how your whole life can change in a split second' — ‘We know more than anyone how your whole life can change in a split second’

At the moment there are four children in Helen House, plus one in the Little Room, and another three children waiting for end-of-life care, being visited at home by outreach nurses.There are 160 staff, ranging from doctors to cleaners and fundraisers, a teacher, music therapist, aromatherapist, play specialists and an army of volunteers. It costs £5.1 million a year to run both houses; Government funding makes up 12 per cent, but the rest is fundraising: £1 million comes in from 37 charity shops.Fundraising was challenging last year, possibly due in part to the negative publicity surrounding their founder, Sister Frances Dominica, who faced historic sexual-abuse allegations. She was under investigation but the CPS dropped the case. She denies the allegations, but had to resign from her role as a trustee of the hospice last December.All 54 children’s hospices in the UK have a similar struggle for funding: on average they receive only 21 per cent of their costs from local Government and health commissioners; the rest comes from fundraising. Many hoped David Cameron would introduce more central Government support, as his late son Ivan was cared for at Helen House and he has spoken fondly of the care the family received there. But nothing has happened as yet.

Perhaps it’s because as a society we don’t like to talk about children dying – unlike in past generations where child mortality was common.

“My great grandmother had 16 pregnancies,” says Clare. “They were used to child mortality. But now it’s a subject we don’t like to discuss.”

We adults may have lost this matter-of-fact attitude to death, but young children haven’t. “We’ve heard siblings talking in the playroom. One will say, ‘My sister has died,’ and the other will say, ‘Oh, my brother died,’ and they will debate ‘which one is the deadest’ or who died first,” says Clare. Her own daughters, aged eight and 10, recently had a discussion about how you would find a coffin for a tall man. “You could fold him in half,” suggested one.

Staff find that children at the hospice often know they are going to die, even if adults have not told them. Outreach nurse Shirley Jones recalls a boy of five who was nearing the end of life, but his parents were convinced he didn’t know.

One day he said he wanted everyone to go up to his bedroom and give presents to his brother, whose birthday was in a couple of months. They were puzzled but did it. He died later that day. “Whether they have knowledge or whether they are picking up on cues from family – sensing anxiety, we don’t know,” says Shirley.

Children are often accepting of death (rarely do nurses hear gravely ill children ask, “Why me?”), but teens and young adults are often angry, perhaps because they have more comprehension of what they are going to miss.

When it comes to end-of-life, children often know what they want. One seven-year-old boy who knew he was going to die was determined only to allow staff to give him limited help when the time came. He even had his wishes laminated to the equipment next to his bed.

When the time came, they abided by his wishes, even though his parents must have wanted to try anything to prolong his life. “His mum was incredibly gracious. She was so terribly upset but she did not ask us to carry on. I had so much admiration for her,” recalls Clare.

When a child dies, the impact on parents is all-consuming; bereavement teams at the hospice are often in touch with them years afterwards. “When a child dies, parents have lost the future,” says Clare. “We help them find a new normal, because it’s never the same again.”

By rights, her work should be gruelling and sad, but she loves it. “I’ve only had three bad days in 11 years here – and only one of them was to do with a death. Working here makes me treasure time with my own children. It makes me listen to them, hug them and spend as much time as possible with them. We know more than anyone how your whole life can change in a split second.”

Complete Article HERE!

August 22, 2016August 19, 2016

Talking to Children When a Parent Is Dying

By Ersilia M. DeFilippis, M.D.

I closed the door quietly behind me and heard the voice of a young child.

A few minutes earlier, I had been paged to a family meeting in one of the conference rooms on the oncology floors. The room was overflowing with people: family members, the social worker, the palliative care team and me. My eyes immediately fixated on the youngest people in the room, who looked to be about 14 and 10.

They were my patient’s children. I had seen their mother earlier this morning; her eyes and skin looked more yellow every day. Her mind was cloudy and her vision was blurry, as the cancer continued to spread throughout her brain.

Now here I stood, trying to communicate the news of death and dying to multiple generations of family members. I felt like an unwelcome guest at a somber family picnic.

During the previous days, my patient had expressed her desire for the medical team to meet with her children without her. She said she did not understand enough of her disease, but she knew she was dying. There wasn’t much more to understand. She was just too sad to tell them herself.

Her daughter, the older child, had been reading on the internet about her mother’s cancer and its treatment.
“What stage is my mom?”
“Stage 4,” one doctor said.
“Do you know what that means?” the social worker asked.
“Yes, that’s the worst one.”
Silence filled the room.
A family member jumped in. “We don’t know what all of this will mean for your mom.”

As health care providers, we struggle with telling patients bad news – with communicating expectations, hopes and fears. It is a difficult but integral part of our job. I was trained in internal medicine, to deal with adults, not children. How was I qualified to have this conversation? The older child spoke like an “educated consumer” and knew all the right questions to ask – but I wondered if deep down she truly understood.

We have a desire to protect the young and innocent from catastrophes. We are tempted to use words like “lumps” and “bumps” to avoid the dreaded “C” word. We resort to vague descriptions, or we hide the cancer altogether.

But children often suspect something is wrong before they are even told. They notice nonverbal cues, see clues in our body language, overhear conversations between adults.

None of this was hidden from my patient’s daughter. All of the truths and tragedies of her mother’s cancer were plastered on the internet for her to read.

The younger child was quiet, not as able as his older sibling to synthesize this new information.

“Is that why she’s yellow?” the younger child asked. “And why she is so confused?”
“Yes, her cancer is getting worse,” the social worker said.

Studies show that levels of anxiety are lower in children who are told of their parent’s diagnosis, even if it’s cancer. However, we also know that the risk of post-traumatic stress disorder is high in children who have lost a parent. These forces impact our desires to tell children the facts and make us ask, how much is too much and how much is just right.

According to the American Cancer Society, all children dealing with a parent with cancer need the following: the name of the cancer, the part of the body affected, how it will be treated and how their own lives will be affected.

Older children, like my patient’s daughter, often express a need to know more.

“How much longer does she have?” the daughter asked.

“That is very difficult for us to say,” the social worker said. She then paused. “It is possible that the time you spend with your mother in the hospital may be the last time you see her.”

My grandmother learned that she had breast cancer when I was 6 years old. I was completely shielded from her diagnosis as well as from information about breast cancer itself – aided, at the time, by the absence of medical blogs and Twitter posts. My grandmother never lost her hair and her skin never turned yellow. But she lived with us in our house, and I never knew she had survived breast cancer until years later, when I had started on my career path in medicine. Fortunately, her outcome was different than that of my patient.

My patient could not bear the thought of being present at that meeting with her children. But she remained bold and courageous in wanting to tell them the truth. She called upon us as health professionals to convey the information she could not.

The conflict she faced surrounding when, how and what to tell her children was a heavy burden to bear. And it remained a difficult task for me and the whole team caring for her. One by one, members of the medical team filtered out of the room to leave the children to process what we had said with their father and aunts.

I lagged behind after the meeting to ask the family if they had any more questions we could answer, lingering uncomfortably until a family member politely said, “I think we just need some family time.” I looked back at the children on my way out, their eyes dry and without tears, before I closed the door behind me.

Over the next few days, my patient got weaker and more confused, with her children by her side. A week later, the two children said goodbye to their mom.

Complete Article HERE!